Invisable Illness - "don't judge a book..."

As my alter ego, I write for another blog specifically about Palindromic Rheumatism. The blog post I wrote recently titled "Invisible Illness & Handicap Parking" was about some of my experiences with invisible disease caused by a car accident and the resulting permanent central nervous system (CNS) and musculoskeletal dysfunction. Although I now have visible diseases that have lessened the negative attention I used to receive, anytime you appear to be healthy and are not, you are likely to fall prey to judgment and speculation. Chronic illness is wide spread amongst the population and as a result the number of people dealing with some form of invisible illness is quite substantial. Here are some statistics:

INVISABLE ILLNESS - STATISTICS

Despite the fact that the majority of the US population looks rather healthy, statistics show a different story. Nearly 1 in 2 people have a chronic condition. This could be an illness like cancer or rheumatoid arthritis, or a condition such as arthritis, migraines or back pain from a car accident.

When studies are done about people with illnesses and disabilities, those who deal with chronic pain on a regular basis, but have not yet been diagnosed are often overlooked. We hope these chronic illness and invisible illness facts will shed some light on why we feel this week is valuable and worthy to inform others about.

WHO HAS A CHRONIC ILLNESS?

• Nearly 1 in 2 Americans (133 million) has a chronic condition. (a)
• By 2020, about 157 million Americans will be afflicted by chronic illnesses, according to the U.S. Department of Health and Human Services.
• That number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million. (b)
• Sixty percent are between the ages of 18 and 64 (c)
• 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases (d)
• In the United States 4 in 5 health care dollars (78%) are spent on behalf of people with chronic conditions. The Growing Burden of Chronic Disease in American, Public Health Reports, May June 2004 Volume 119 Gerard Anderson, PhD

WHAT ABOUT INVISIBLE ILLNESS?

Approximately 96% of people who live with an illness have an illness that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy. (2002 US Census Bureau)

-The above excerpt is courtesy of Invisible Illness Week

I can't help but think that this desire for society to judge seemingly healthy people (who are not), as hypochondriacs, is a direct result of feeling threatened. Although there are plenty of people out there who have scaring from dealing with a hypochondriac, or simply wish to make them selves sound intelligent, I really suspect that it stems from a human desire to bring other people down to our level...or lower. You can see this kind of behavior in many other areas of society. For instance, if you see someone of the same sex that is more attractive, the natural human reaction is to snicker and assume that the attractive person is stupid. Why? Because it makes us feel better about not being as attractive! And although it's not one of the nice aspects to human behavior, it is a typical response to use social stigmas to judge someone as being less than you, in one way or another.

And when we look perfectly healthy and are complaining about our multiple illnesses it only makes sense that others would judge us to be hypochondriacs. Although I wouldn't say that most people see being handicapped or ill as an advantage, there are plenty of people that think we do it to get attention or favors. Attention and favors that they are not getting. The saddest part of the whole thing is that the vast majority of handicapped people would gladly trade their parking permit, attention and favors in for pain free living, I know I would!

So, how does one deal with invisible disease? Well, creating awareness is a good first step. Although I tend to avoid talking about it unless asked, as I feel that if people ask, then I have not come across as though I am looking for the attention. With family and loved ones it's usually easier, but some good techniques are...

• Have a critical family member accompany you into to see the doctor
• Provide them with reading material about your ailment(s)
• And above all, be patient.
  

If you tell the truth, eventually people will see you for who you really are and no longer doubt you. Sometimes it may take a while because they don't or can't understand in the same way that you do, but it is important to stay calm and allow them to come around. Underneath it all you know what you are going through. And if you feel like you are lacking in support reach out to others suffering with the same issues. Join an support group or forum. Converse with people that know and understand the difficulties you face.

Living with an invisible disease is not easy, but you are not alone. Check out Invisible Illness Week. The site has a lot of great articles and information that can help. Cheers!

New Beginings

I don't really remember the first time I was born, but I imagine it went much the same way anybody's first time goes. I'm sure there were tears and commotion. I'm sure it was a messy affair with quite a bit of pain, or so my mother tells me. The second time I was born it was pretty much the same, only that time I was born alone and the pain stuck around.

I was very nearly killed in a car accident at midnight on Friday October 13, 2001. A drunk driver entered an exit ramp going the wrong way on a divided highway and collided with my car head on. As the headlights of the other car slowly registered in my brain, which was tired and sluggish after working that night, I realized my misfortune in being in the left hand lane. As memories from the drivers ed classes I took at 16, flashed in front of me in a fraction of a second, there was one lesson that I remember instinctively, out of survival. "If you see a car on the wrong side of the road, always pull over onto the right hand shoulder and stop." But this car was barreling down the middle of both lanes, and having no other choice I pulled onto the left shoulder and started to slow down. I looked down at my speedometer, and in the exact same second that I looked up, the headlights veered and came straight at me. The only thought that ran through my head was, "this is going to hurt." The world convulsed and then nothing.

I was conscious for several long seconds before I opened my eyes. My brain screamed back to into consciousness, but the rest of my body didn't seem to be on the same wave length anymore. I mentally crawled out from what ever black hole I had unintentionally tumbled into, as I started to hear voices around me. It was then that I realized the extent of the damage. My car had been hit on a diagonal. The head on collision was just right of center and my car had been crushed in on the passenger side seat, pushing the rear drivers side, up onto the 3 foot cement barricade that divided the highway. The steering wheel was 2-3 inches from my rib cage, and the head rest of what was left of the passenger side seat had been pushed over landing where my head had been a few seconds before. It forced me to keep my head pushed to the left, which didn't bother me because I had no desire to move. The voices became louder, and I could make out a young couple frantically calling the police. The girl took off her jacket, on a very cold night, and threaded it through the wreckage in order to place it on me.

Once the police arrived the motions and noises became a blur, with the exception of one officer. He stayed with me asking me questions, keeping me focused on his voice as they worked to clear out enough of the wreckage to reach me. Minutes before the ambulance arrived he got become very solemn and said "I know this isn't the best time to tell you this, but I don't know if I'll get another chance. I have been working car accident scenes for 25 years and I have never seen a car that looked like this with somebody alive inside of it. So, I don't know if you believe in God or Buddha or whatever, but when this is all over and you have a moment you need to go to church or something and thank someone for keeping you alive." Those words are as clear to me now as they were that night.

The price paid for surviving that night has a daily impact on me as I have spent the last 8 years wading through a multitude of doctors, tests, diagnoses and recovery. Some injuries I have fully recovered from, and some I will likely live with for the rest of my life. My primary diagnoses consist of a TBI (traumatic brain injury), PTSD (Post Traumatic Stress Disorder), SCI (Spinal Cord Injury), Central Nervous System Hypersensitivity, Myofascial Pain, and a severe cervical spine instability that requires me to wear a cervical collar when riding in the car. My cervical instability is due to the rupture of 2 our of the 3 ligaments that attach the base of the skull to the spinal column. The smallest and weakest ligament of the three is all that I have now to keep the two connected, with the likelihood of death should a minor fall or whiplash ever rupture that remaining ligament. As a result of the rupture to the ligaments where my head and spine attach, my head was allowed to move much further than normal. This caused a great deal of spinal cord damage. I was later told by my doctors that it was a miracle that I was alive let alone not paralyzed.

I was very fortunate, despite spending months in a wheelchair unable to walk due to a fractured ankle and severe nerve damage in my legs. I went through vision therapy to learn how to read again, physical therapy to learn how walk again. I went through Biofeedback and EMDR therapy, and just about every other kind of mental and physical therapy you can think of. The number of treatments and medication I have been on is mind boggling at best. Every single day I weight the risk of liver damage against the effects of living with chronic pain. When I learned a few years back that chronic pain depletes the grey matter of the brain, I started to fear the consequences of both, taking and not taking the medication. And then three years ago the already prickly life that I had started to come to grips with, got complicated.

In the spring of 2006, after many doctors, tests and misdiagnoses, I was diagnosed with Endometriosis (an autoimmune disease affecting the reproductive organs in women) And then in the Fall of 2007, I became wheelchair bound over the course of 24 hours. I went from doctor to doctor being told that I was depressed and that it was all in my head. Finally, after 4 months I was able to see a specialist and received a diagnosis of Palindromic Rheumatism, which is an atypical onset of RA (Rheumatoid Arthritis).

Along with discovering about all of my health problems over the last 8 years, I have also been on a path of self discovery. At 27, I have much more in life to experience and certainly this journey is not over, but I have accepted who I am. A little unconventional and stubborn, but full of enthusiasm and passionate. I want to spend the rest of my life living, rather than watching it go by because I have allowed my poor health to keep me prisoner. I want to live a full life, and if I am going to do that then it means that I have to make a commitment to the process of getting healthy. In the past few weeks I have watched my arthritis getting worse, and this has lead to several revelations about my future if my health continues on it's current path. I need to take an active role in my health, and even though it won't be easy I am determined to exhaust all avenues of alternative, holistic, and eastern medicines, along with exercise, diet change, supplements etc. And because I know how difficult and lonely this path can be, I am going to be writing about all of my experiences with different treatments past and present. Please join me on my journey to better living and a healthier body, mind and spirit.